About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Saturday, May 10, 2014

Hi Everyone! Wow, it's been a while since I've written! Mainly because I had taken a break from going to Denver! Our main concern of course was getting rid of the bleeds, and Dr. Robinson (DDS and Plastic Surgeon) did that by cauterizing the capillaries in my gums! It took a while for me to adjust to not having to worry anymore while I was eating a meal, or brushing my teeth or having a bleed in the middle of the night! So, after taking time emotionally, physically and mentally, I was ready to get back to CO!
About a week before my appt. time, I get an e-mail from one of Dr. Yakes P.A.'s - Mandi Shaw, that she was very excited that I would be there next week! I just can't emphasize enough how awesome everyone @ Swedish is! I had posted on Facebook that I would be there the following week, and immediately got a response from one of the nurses (Laurie) @ Swedish, also looking forward to seeing me! They make their patients feel so great and well taken care of!

Mandi

Laurie

Marks brother Jim and his wife Shelley would be taking care of our kiddos while we were gone a few days. For me that's the worst part of the trip, leaving Hanz and Bella! We took them to see the Easter Bunny this year! They're familiar with Santa Claus but this was their first time with the Easter bunny and they were not too happy!

Anyway, soon as we arrive @ the Southwest counter @ the airport, the clerk recognizes me, "Hey! Haven't seen you in a while"! I've been flying to CO for so long, I get recognized @ the airport! Flight took off and we landed @ Houston Hobby airport. Mark and I like to sit across the isle from each other, that way each of us gets an isle seat - Mark for stretching out his long legs and me for being claustrophobic. So we board the plane in Houston - the passengers were almost all on board and @ the last minute, a lady asked if she could sit in the seat next to me (middle seat) since the window seat was already taken. I said yes of course and didn't realize until she sat down, that a big part of her was spilling over to my seat! Yikes! I looked @ Mark and whispered, "I'm going to need a Xanex"! He was going to stand up and say something to one of the attendants, but I shook my head no. Well a few minutes later, the attendant that boarded us, called Mark and pulled him aside several feet away. He asked Mark if I was his wife, and would I mind moving to the empty seat that was between Mark and the gentleman already @ the window seat. I do not like the middle seat, but didn't have much of a choice since the rest of the seats were taken! Oy! After moving across the isle, the middle seat didn't seem so bad after all compared to where I had just been! Turns out the flight attendant told Mark he would give us a $100 voucher for the inconvenience. Once we landed and went to the Southwest counter, the attendant gave us an extra $100 voucher - cool! We can certainly use that on our next trip!
Took the shuttle to the car rental area and picked up a vehicle. Headed over to Ted's Montana Grill since it's near the airport where we have befriended one of the waiteresses there! Turns out Michelle used to live in Calallen! She is the sweetest person, the kind that would give you the shirt of her back! I keep in touch with her on Facebook but hadn't seen her in a while, so it was great visiting with her again!
I had a mushroom swiss bison burger with sour cream and avocado and Mark had a bison burger called The Kitchen Sink and it included ham an over easy egg and avocado and who knows what else!

Headed to the Safeway grocery store near Swedish to pick up some snacks before being admitted. Ran into another nurse that recognized us from my stays @ Swedish, so visited with her a bit! We finally got to Dr. Yakes office - I had brought Becky, the patient coordinator, one of my favorite things - a Circle E candle called Bird of Paradise! She is such a doll and helps me so much when I set up my appointments! Kelly and Mandi were both there and Andi (all Dr. Yakes P.A.'s) is the one that had me doing my admitting paperwork. We waited a while in their reception area, as we were told my room wasn't ready yet.

Finally we're told my room is ready and are lead to the 5th floor. WHAT? I always stay on 7 North - that's where all my peeps are! We were going to be put in a room waaaay on the old part of the hospital. Oh no! I immediately protested - nothing against any of the nurses on 5th floor, but I just couldn't imagine staying in that room! Mark was making himself comfortable right away, but I walked out of the room and around the corner, playing a game on my phone while I thought things through! All this time I didn't realize that the nurses on 7th had seen my name on the schedule and were saying that they knew me and I had to stay on their floor! One of my favorite nurses, Dave Labadie (part of what I call my dream team - the first group of nurses that ever took care of me @ Swedish) is now in an administrative position on 7 North and he must have gone to the Nursing Director, because next thing I know, she is introducing herself to me and saying that they will manage to put me on 7 North!

Dave Labadie

I hated to act like such a brat, but as long as I've been going to Swedish (11 years) I always stay on 7th floor and have become so familiar with everyone there!

I was happy to see Becky, another favorite nurse was on duty! She was happy to see me as well - she is a super sweet!

Had a new nurse on duty that I had never met named

Sariet! The other nurse with her hand on her waist is April and she says I have to get in line behind her to "adopt" Alex, my favorite Tech as a little brother! I brought him a t-shirt that says "Don't Mess With Texas"! Alex is a real sweetheart! He is very encouraging when I tell him about the surgeries I still need, by saying "baby steps".

Alex

Here is another nurse that came by and was excited to see us! It's so great being there, just knowing how well you're going to be taken care of!

So, finally settled in for the night - since we would only be staying a few days, Mark would stay with me in my room!

Anyway, of course I couldn't eat or drink after midnight since I would be having a couple of procedures in the morning. I kept asking when I would be taken for the MRI, so I could make sure the nurse could give me some valium since I'm so claustrophobic and hate being put in that tube! Laurie (the blonde nurse pictured above) was on duty in the MRI area, so it was nice seeing her! All this time I've been having problems with my allergies and have been trying for several weeks to get rid of my hacking! I had already had 2 shots and 2 rounds of z-pack antibiotics with my primary care physician here - but turns out, since I had a low grade fever, anesthesia decided it wasn't a good idea to put me under for the angiogram I had scheduled, with possible embolization if there was any trace of avm showing up. I got to see my favorite anesthesiologist, Qin, so that was cool! Back to my room and I just wanted to eat! Started snacking on the sugar cookies we had gotten @ Safeway and Mark went and got me a Venti Carmel Frappucino for the "trauma" of having the MRI! LOL! Yum!

I ended up getting some potassium through my IV, as well as iron and 2 units of blood!

I almost forgot to mention that on this trip we were able to meet one of Marks second cousins, Elizabeth, who volunteers @ Swedish! Now that we've had so many trips behind us and we know what to expect, we were able to relax and take time to enjoy visiting with Elizabeth! She is very knowledgeable about the medical field, as she works in a Hospice. She came by my room on her way home from work and stayed a bit, but wish we had more time to visit with her! Maybe next trip!

We also had a visit from an older lady from one of the nearby Catholic churches. She asked if we would like to receive communion so of course we said yes! We prayed and had a nice visit with her.

Later in the day, Andi came by and said that since I wouldn't be having the Angiogram after all, she really couldn't justify my staying another night in the hospital - in other words, the insurance wouldn't pay for it. Yikes! We immediately called the Marriot Suites that give us a hospital rate and luckily they had a room available! Packed up our stuff, stopped @ Wholefoods to pick up something for dinner (found the latest issue of a magazine I like)

and checked in to the hotel! Settled in to watch American Idol and relax before my appointment with Dr. Robinson the following day!

Meanwhile, my phone didn't seem to be working! I shut if off and on several times, but could tell something was wrong because I wasn't getting any notices on Facebook!

In the morning, I got up really early, took a shower and once Mark was ready, we headed down to the free breakfast the hotel offers! We had plenty of time before my appt., so Mark and I headed to Sprint to have them look @ my phone! Had to leave it there an hour, so we went to have lunch @ the Cheesecake Factory! Mark had the avocado egg rolls

and I decided to do something I normally don't and ordered a pina colada to go with the sweet tamale corn cakes with avocado that I usually order!

That restaurant is located @ the mall in the Lone Tree area, so we walked around a bit - we like going to see the puppies @ the petstore! Don't know what this is, but Mark took a picture of it!

It's finally time to go see Dr. Robinson for a consultation, so we had a nice visit with him! He was happy to see how my lip/chin area had healed that he worked on in Nov./Dec. He's thinking he wants to start debulking the area under my chin! He knows there are some coils in there that still need to be removed. This will be a tough one - it will be hard to know how long I'll need to be in the hospital after the debulking. There are several surgeries that need to be done, so this will all be done in stages!

Here's my Hanz - has to be near me while I'm blogging, so I put him on the stool next to me!

After Dr. Robinson's appt., we headed to pick my phone up @ Sprint. They had told us they would have to reset it, so it was a pain having to go after some of the programs I had already installed, as the only thing that transferred were my contacts and photos! Went on to return the rental car and head to the airport for what we thought would be our 4:50 p.m flight. We got there a couple of hours early - and next thing you know, Mark gets a notice on his phone that the flight has been delayed to something like 5:10 p.m. Not too bad we're thinking, we were just concerned about making our connecting flight in Houston taking us home to Corpus! There was a couple more delays and we didn't leave Denver until about 7 p.m.! Guess what that meant? Yup. Missed our connecting flight by 5 minutes! Had to get on a shuttle to take us to a hotel where we spent the night until the first flight available to get us home - 10 a.m.. the next day! Our flight should have originally gotten us home @ 11 p.m. and I had hoped to go in to work on Friday! Since it wasn't looking like that was happening, I called my PCP and had them make an appt. for me to see my ENT, hoping Dr. Zane could give me something else for my hacking! I was thinking about how much I wanted to see my furry kids and now I had to wait another night!
We finally board our plane in Houston the next day, and that had already been delayed once! Had to call my ENT to tell them I'd be an hour late! The one good thing that happened was that I met a really nice person on the flight! Her name is Leone Lewis and we had lots to talk about, because she also has pets! Just wish I hadn't been hacking the whole time, but I really enjoyed talking to her! I gave her one of my blog cards and she gave me her number so I could send her a cute dog cartoon I had!

I recently joined a group on Facebook called I love My Brussels Griffon and I love it! We all talk dog and post photos and comments on our Griffs! I just had to share a couple of photos with you! This one I thought was hilarious - the Griff gets on the Roomba vacuum and rides around on it!

Here is that same Griff with a Roomba hangover! Lol!

Here is another of my favorite Griff photos - her name is Chloe and she has her own Facebook page with her two maltese siblings - look up Harvey, Bonnie Bow and Chloe for some great photos!

Ok, I really have to go! Hanz has already been swiping @ my ankles to get off the computer! Mark went to some concert with his brother Jim, so I've already heard the kiddos hooowling for daddy @ least once!
Thanks so much again to everyone for all your love and support! Couldn't do this without you!
Love and Hugs!
Mark, Cyndi, Hanz and Bella!